A scientist who has devoted his life to Tay Sachs prevention after losing two daughters to the genetic disease has expressed anger at NHS plans to scrap free tests for the Jewish community.

The UK National Screening Committee (NSC) plans to charge up to GBP250 for a test for the fatal illness, which leaves babies unable to breathe independently and effectively living in a vegetative state.

A baby with Tay Sachs appears normal at birth, but development starts to slow down at about six months. Gradually the child becomes blind, deaf and paralysed, usually dying by the age of four.

Dr Philip Koch, who lost two daughters to Tay Sachs in the 1960s, has attacked the proposal. He said: “What makes me angry is that we have nearly rooted the disease out, but diseases aren’t interested in ‘nearly’. Over time we have screened so many people that today, youngsters often know they are clear of being a carrier of the gene that causes Tay Sachs as their parents aren’t carriers. As far as I know, there has only been one Tay Sachs baby in the Jewish community in London in the last five years, but that won’t be the case if funding for the test is scrapped.”

However, in a consultation, which closes in a few weeks time, the NSC states: “It is estimated that only one child per year is likely to be born with Tay Sachs disease out of the estimated 2,772 babies born of Ashkenazi Jewish origin in England. The UK Jewish population is relatively small compared to the total UK population. This means that although the carrier rate in this group is 10 times that of the non-Jewish population, there will still always be more non-Jewish children than Jewish children identified with the disease annually in the United Kingdom. A total of two or three babies are expected to be born each year from the non-Jewish population who would not have access to screening.”

Dr Koch also claims that the costing of the test by the NHS is “completely wrong”. He said: “They originally quoted GBP450 and now they have come up with GBP250. If they do several a day, I don’t see how it would be more than about GBP35 per test. Their reasons for wanting to scrap it are because they don’t want to appear to be favouring a particular population group. If you see a child with Tay Sachs, and witness firsthand the anguish it causes parents, you would know why eliminating this disease is so important.”

When both parents have the defective gene, there is a 25 percent chance their child will develop the illness. While the disease is most prevalent in the Ashkenazi community at a rate of one in 27 it can also be carried by other groups, but at one in every 250.

Dr Koch developed the enzyme test to detect unaffected carriers of the condition in 1967. He offered it initially as a private clinician until 20 years ago he joined forces with Jewish Care to campaign for wider testing among Ashkenazi Jews.

While the cost of taking 200 samples of blood every year and providing information on the disease lies with the Jewish community, Guy’s Hospital is currently running tests through NHS funding.

Katrina Sarig, executive director of Jewish Genetic Disorders UK, said Jewish organisations had responded to the consultation on the proposals by arguing the programme should not only be maintained but expanded.

She said: “There are other genetic disorders that disproportionately affect Jews and we can now test for multiple disorders at the same time. But instead of seizing the opportunity there appears to be cutbacks on the way.”

The visit was approved this week during the Trades Union Congress in Brighton and means a delegation will now go to Gaza with the PSC “to determine how the TUC may most effectively contribute to the end of the blockade”.

The motion, tabled by the Communication Workers’ Union, adds: “The blockade of Gaza by the government of Israel is now in its sixth year. On 14 June, 50 international charities and UN Agencies called for an immediate end to the blockade. They noted that violation of international law, affecting 1.6million people, over half of whom are children.”

The Fair Play Campaign group – a joint Board of Deputies and Jewish Leadership Council initiative – said: “PSC trips are necessarily biased and one-sided, meeting only those parts of Palestinian society that support its views. In particular, PSC trips to Gaza usually include meetings with terrorist leaders from Hamas. We believe that the trip should not go ahead as envisaged in the motion.

“However, if it does, we call upon the TUC to have a more balanced visit to the wider region, organised by neutral and fair organisations, and to guarantee that they will not meet with the terrorist leaders of Hamas.”

They added: “The TUC’s decision to singularly focus on Gaza again is bizarre. There is no motion on Syria, at a time when hundreds are dying every week, or on anywhere else in the Middle East, which is still reeling from the aftershocks of the Arab Spring.”

A TUC spokesperson said: “We have strong links with trade unionists in both Palestine and Israel. No decisions have been made on who we will seek to meet, but we will consult widely on who to talk to.”

The US Secretary of State stressed that economic sanctions were beginning to bite, in response to Netanyahu’s comments last week that they were proving ineffective in stemming Iran’s nuclear ambitions.

The Israeli Prime Minister said: “I see no clear line from the international community” and called for “drawing red lines” which, if crossed, would prompt a military strike against the country’s nuclear facilities.

Clinton (pictured) acknowledged that while Israel and the US shared the goal of preventing Iran from developing a nuclear weapon, there were disagreements about the timetable of negotiations with the Islamic republic. “Israel is more anxious about a quick response because they feel right in the bulls-eye,” she said. “But we’re convinced we have more time to focus on these sanctions, to do everything we can to bring Iran to a good-faith negotiation.” She said the Obama administration would not be setting deadlines, adding: “Negotiations are by far the best approach”.

Clinton added: “We’re watching very carefully what Iran do, because it’s always been more about their actions than their words.”

Her comments came ahead of this week’s high-level meeting of the United Nations’ International Atomic Energy Agency, which reported last month that Iran had raised the uranium-enrichment capacity at its underground Fordow facility and increased stockpiles of medium-enriched uranium, a step short of nuclear-bomb material.

During the past week, Clinton has been to both China and Russia, speaking with both nations’ leaders to seek unity in their stance on Iran. After her meetings, she said the two countries shared the US view that Iran must be stopped from acquiring a nuclear weapon.

Leaders from the six powers involved in negotiations with Iran are expected to attend the annual UN General Assembly in New York later this month.

The figure was released following a freedom of information request by the website thecommentator.com.

It revealed the corporation has so far spent £332,000 on legal fees to conceal the Balen Report, commissioned in 2004 by former BBC director of news, Richard Sambrook, following allegations of anti-Israel bias. The actual cost to the BBC is likely to be far higher, as in-house legal time and VAT are not factored in.

Robert Halfon, MP for Harlow told the Jewish News: “It is outrageous that the BBC has spent license fee payers’ money on trying to suppress information about their attitude to Israel that should have been public. I will raise the matter in the Commons.” Halfon will also write to Chris Patten, chairman of the BBC Trust.

The report by senior journalist Malcolm Balen looked at the corporation’s coverage of the Israeli-Palestinian conflict across radio and television. In 2005, commercial lawyer Steven Sugar asked to see Balen’s assessment but his request was turned down by the BBC on the grounds that publication of the report would directly impact on its coverage of crucial world events and FOI legislation did not apply. The corporation subsequently won its case at the information commission.

Sugar appealed to the information tribunal, which overturned the commission’s ruling in 2006. However, in 2007, the high court not only backed the original commission decision but imposed restriction on potential appeals to the tribunal in the future. That ruling was upheld in January 2008 in the court of appeal. In May 2008, the House of Lords’ judicial committee allowed Sugar, who died last year, to take his appeal to the law lords. However, it was rejected.

Earlier this year the Supreme Court unanimously dismissed the appeal by Sugar’s widow, Fiona Paveley, and his former firm, Forsters.
Paul Charney of the Zionist Federation said: “The question is why the BBC would spend this money to cover up its own publicly commissioned report? The only credible answer must be that they have something to hide, for they would not bury good news.” A spokesman for the Board of Deputies said: “We are surprised that the BBC should see fit to spend such a large amount of the licence fee, to keep secret a report on a matter of concern to many members of the public.”

A BBC spokesman said: “We have always maintained that the report was held for the purposes of journalism and was therefore not disclosable under the act. This is the principle we are protecting.”

The 11-day event, which opened last night, features around 4,000 athletes from more than 160 countries.

Philip Bunt, director of corporate services at Norwood, said: “I hope that when the public sees disabled athletes competing at an incredibly high level, it will help change the way many think about the issue.”

A spokesman for Jewish Blind & Disabled, which provides assisted living for more than 300 people, said: “The Paralympics is a wonderful opportunity to show what someone with a disability can achieve. We may not have any Paralympic medallists among our tenants, but we do have people who overcome challenges on a daily basis and are equally deserving of recognition for their achievements.”

Jewish Care, meanwhile, said that the sight of able-bodied athletes training alongside Paralympians serves as a model for “greater integration”. A spokesman added: “Seeing athletes together is similar to our own assisted volunteering programme, which allows people to learn skills while being supported throughout – or a job coach who can give an individual new-found confidence, or a buddy system that makes people feel part of society.”

Culture Secretary Jeremy Hunt described the Games as “a historic moment for the country that founded the Paralympic movement”.

He was speaking as torchbearers lit the Paralympic flame at Stoke Mandeville Stadium, near the country’s leading rehabilitation hospital for spinal injuries. It was where German-Jewish immigrant Sir Ludwig Guttmann created the Paralympic movement by encouraging patients injured during the Second World War to take up competitive sport.

Meanwhile, a Jewish performer has spoken of her experiences preparing for last night’s London Paralympics opening ceremony. Millions of viewers saw Vivienne Brown, a former marketing manager for Norwood, dressed in a blue cape as part of the cast in the “Navigation” section, featuring a troupe of 300 people who form a crescent as disabled performers complete hire wire acts.

Speaking before the opening ceremony, she said: “The whole experience has been awesome and inspiring – the culmination of lots of hard work,” she said.
“I love dancing so since June I’ve volunteered for more than 70 hours of rehearsals, learning the choreography and dancing with other performers, both able-bodied and those with disabilities. I’ve made some great friends.”

The former MK’s comments came days after Iranian President Mahmoud Ahmadinejad launched yet another verbal tirade against the Jewish state, describing the country as an “insult to humanity”. He also revealed a raft of new weaponry as well as reportedly upgrading its surface-to-surface ballistic missile.

Sharansky told Israel Radio that discussions by Israeli defence officials about an Iranian nuclear threat “is the source of significant concern amongst Jews around the world”.

Despite new Jewish Agency figures revealing a two percent worldwide increase in aliyah for the first six months of this year, he added: “For months now, we’ve had dozens of instances in which potential immigrants have been postponing their aliyah – people who had already finalised their aliyah plans informing us that they’re postponing their arrival by a number of months.” Sharansky quoted a potential immigrant who recently told him that “when the nuclear war in the Middle East passes, then we’ll come”.

Sharansky, who in 1977 was arrested on charges of spying for the United States and treason and sent to a Siberian labour camp before becoming the first political prisoner freed by former Soviet Union Mikhail Gorbachev in 1986, also accused Israeli leaders who have spoken out in favour of attacking Iran as having “crossed every red line”. He added that they had “reduced the government’s deterrent capabilities”. Sharansky argued that this stance “does not provide Israel with any strategic advantage”.

Last week Israel’s deputy foreign minister insisted Iran should be given just a “few weeks” to cease its nuclear programme as speculation intensified over whether Israel would launch a strike against Tehran.

Danny Ayalon told Israel Radio: “The international community should announce the diplomatic process with Iran failure, today. It needs to be made clear that if they don’t halt their nuclear programme all options will be on the table, and not just on Israel’s part.”

Outgoing Home Front Minister Matan Vilnai has suggested that a strike on Iran could trigger a month long conflict on several fronts which could lead to several hundred Israeli deaths.

Last Sunday’s three-hour extravaganza at the Olympic Stadium in Stratford, which featured chart-toppers including George Michael and Jessie J, marked the conclusion of one of the biggest events in the capital’s history with the extinguishing of the Olympic flame. Among the community members who played an active role on the night was Miranda Salter. The 49-year-old had a dual role of marshalling some of the world’s greatest athletes and – wearing a zany blue suit, bowler hat and stripy socks – performing in a dance routine alongside Jessie J and the Spice Girls.

Salter, from Hendon, described the moment the Spice Girls emerged from the London taxis that brought them into the Olympic Stadium as “enthralling”, adding: “The noise from the crowd was incredible although it didn’t take me by surprise as we were told a week earlier” who the VIP passengers would be.”

Melanie Franklin, a dance teacher from Borehamwood, performed in the opening street party scene as a dinner lady, dancing in an open truck that circled the 80,000-capacity arena.

During dress rehearsals, she chatted to Queen guitarist Brian May, another of the headline acts, as he strummed to Another One Bites the Dust, and met comedian and actor Russell Brand. She told the Jewish News: “It was an incredible day – all of the rock stars, including Brian, were friendly and happily chatted to us. They were just thrilled to be playing their part.”

The party atmosphere spread to the athletes following 16 days of intense competition. Zohar Zemiro, who hours after running in Sunday’s men’s marathon was part of the 36-strong Israeli team who took part in the athletes’ parade, described the ceremony as “glamorous” and “tremendously enjoyable”.

He added: “One thing I particularly enjoyed was seeing the reaction of the crowd and their support, particularly for the British athletes.”

Others to enjoy a front-row view of the Games over the two weeks were the army of volunteers, both London Ambassadors and Games Makers, whose number included many community members. Among them was Elizabeth Fishel, who swapped her day job as events manager for Maccabi GB to become one of seven volunteer assistants to the Israeli National Olympic Committee. “To have the privilege to be involved in the world’s largest event, in the country where you live, is amazing – but to support the country that holds your heart is an honour beyond words,” she told the Jewish News. “Seven of us worked together over the past five weeks doing everything from setting up computers, translating, sewing logos on competition tops to providing tours of the Olympic Village.”

In the athletes’ village, where she was based, there was plenty of time for star-gazing. Her personal highlight was meeting gymnast Beth Tweddle. “However, meeting Tom Daley and the Duke and Duchess of Cambridge came close,” she added.

Professor Moty Cristal, an expert on negotiation and conflict resolution, filed a discrimination case with the Employment Tribunal against Manchester Mental Health and Social Care Trust, which organised the session. The country’s largest public service union, Unison – whose representatives allegedly told the trust that participation by members would go against union policy – is also named in the action.

Although Cristal could not be reached for comment yesterday, Jewish Leadership Council chief executive Jeremy Newmark told the Jewish News that it is “supporting (him) in taking legal action against the trust and Unison for discrimination”. A statement added: “We are liaising closely with the Government of Israel in this matter.” Cristal this week held talks with British Ambassador to Israel, Matthew Gould, at which the issue of boycotts and the peace process were among the issues discussed. The embassy told the Jewish News that the envoy used the opportunity to reiterate Britain’s opposition to boycotts but a spokesman did not reveal whether his legal action was also raised.

News of the action emerged three months after allegations Professor Cristal made in the Guardian that his invitation to lead a session for NHS managers and union officials in Manchester, was cancelled because “people didn’t have the wisdom to look behind the Israeli flag to my professional contribution”. Cristal – chief executive of Nest Consulting, an Israeli firm that advises companies in the private and public sectors in crisis management – said he was due to present a master-class on May 8th on ‘The Role of Negotiation in Dealing With Conflict’ until he received an email cancelling the event. According to extracts from the email, printed in the newspaper, the session was cancelled “on the grounds that it is Unison’s policy and also that of the Trades Union Congress to support the Palestinian people”.

According to the Guardian report, a spokeswoman for Unison confirmed at the time that its members had requested that the invitation be withdrawn. “Our members would find it difficult to be lectured in conflict resolution by someone from Israel. The union’s policy was to support a boycott of goods and services from illegal Israeli settlements in the West Bank rather than ‘a direct boycott of all Israeli people.’ “Unison members in Manchester were also concerned about the inappropriateness of the trust inviting a lecturer from abroad in a time of austerity, and objected to the notion that union-management relations within the trust needed conflict resolution,” she added.

The Manchester Mental Health and Social Care Trust reportedly said at the time: “Moty Cristal’s name was originally put forward by a third party. Subsequently, Unison representatives informed the [trust] that participation by its members would be in direct conflict with the union’s official policy stance. Given the likelihood that large numbers of staff would not attend, the [trust] took the decision to cancel the event.”

On the court proceedings, a spokesman for the trust told the Jewish News: “We do not comment on matters that have yet to be adjudicated.” Unison could not be reached for comment.

David Cameron, Nick Clegg and Ed Miliband descended on the Guildhall with nearly 1,000 other guests on Monday with one common purpose: to pay tribute to the 11 athletes and coaches whose lives were brutally cut short 40 years ago for no other reason than their nationality.

Such was the importance placed on the service that joining them were London Mayor Boris Johnson, London 2012 Chairman Lord Coe, Germany’s Foreign Minister Guido Westerwelle and Metropolitan Police Commisioner Bernard Hogan-Howe – the latter lighting one of the 11 memorial candles for the victims. Messages were also read out from Prince Charles and US President Barack Obama.

Addressing a reception before the service – which was organised by the Israeli Embassy, the Israeli Olympic Committee and he Jewish Committeee for the London Games – Cameron described the murders as “a truly shocking act of evil, a crime against the Jewish people, a crime against humanity, a crime the world must never forget”.

He added: “Our two countries, Britain and Israel, share the same determination to fight terrorism and to ensure these evil deeds will never win. We remember too the six Israeli holidaymakers brutally murdered in Bulgaria last month… we in Britain will do everything we can in helping to hunt down those responsible.”

Guests were transported back to the terrible day in 1972 with a video presentation featuring media reports from the time before kaddish was recited and a minute’s silence observed.

However, it was the condemnation of IOC President Jacques Rogge, who sat in the front row, for failing to hold an official silence during the London Opening Ceremony that drew the biggest applause from the capacity audience.

In an uncompromising address, one of the Munich widows said: “Shame on you, IOC.”

Labour leader Miliband, whose party publicly supported calls for a minute’s silence in the Commons, said: “We know for you, the families, each Olympic Games brings terrible memories. Tonight we grieve with you.”

Clegg hailed the Munich widows’ campaign for an official commemoration and said: “The world will never know the Olympic glory the athletes could have achieved or the joy their participation would have stirred at home.”

The pair attended around 30 rehearsals, culminating in last weekend’s thrilling performance which saw them marching and drumming as England’s green and pleasant countryside made way for the chimneys and factories of the industrial revolution.

Miranda, a member of Hendon United Synagogue, who is battling breast cancer, told the Jewish News she had “fulfilled a lifelong ambition”. She said: “It was exhilarating to be involved in the biggest event in the world. It was particularly special because I was able to attend all the rehearsals and get through the big night despite not being entirely healthy. I didn’t tell the organisers about my illness, and I was worried about having the stamina to get through the three- and-a-half hour show.”

Miranda had a last-minute chat with Boyle just before the ceremony began. She said: “At 8.50pm, 10 minutes before the start, he announced to the audience that we were about to go live on television to the world. I was right next to him so I wished him good luck for the show and he wished me, ‘good luck with the drumming’. And then he signed my drums which was fantastic!”

Miranda later turned her attention to stewarding some of the competitors during the athletes’ parade, including Jamaican sprinter Usain Bolt.

Adam, meanwhile, said the spectacle far exceeded expectations. “It was a brilliantly ambitious concept – displaying the England of yesterday and today through the youth of tomorrow. We performers pulled it off as planned and produced an amazing spectacle for all the world to marvel at and enjoy.”

Adam was later part of the drumming group that marched behind Team GB.
The performers’ work is not done yet as they are now both rehearsing for the closing ceremony on 12 August.